Friday, January 13, 2012

Autism Community, Highs and Lows

Around the blogs, forums, and social networks, the year began with the annual call for cooperation and civility within the "Autism Community." It is a community I'm not sure exists, but there are certainly communities.

Within four to six hours, the divided community found itself in yet another round of "Who speaks for whom in the autism community?" I linked to one New Year's post on Facebook, but generally I don't get too involved in the blogosphere nastiness. It isn't much of a secret that I'm not that engaged in "causes" and don't care for the debates.

We do not need to share experiences or challenges to support each other. Why do we so often begin with the assumption that if you don't share identical experiences, you can't be an advocate for autistics / people with autism / whatever description you prefer?

There are a handful of parents who will never consider high-functioning, verbal, non-verbal writers, twice exceptional, or whatever else they view as less negatively affected by autism to be "autism" as they experience it with their sons and daughters.

That's okay with me. Their children do have different needs. I'll support some of their causes and not others. I'll support some research projects and not others.

But, just as I need to appreciate that their experiences are different, those parent activists need to remember that the "other" autistics face obstacles, too. Those obstacles include job training, access to education, and navigating a medical system that can be intimidating.

I do not "speak" for parents, other teachers, other researchers, or other autistics. I claim no expertise on what is best for or desired by anyone other than myself. I have some general suggestions, yes, but I always admit those recommendations are mine alone. Sometimes I will agree with activists and "movements" and often I will not.

I do not view the needs of "autistics" as a singular list of shared priorities. I cannot argue that distinctions of "high" and "low" functioning do not matter. There are different needs.

But the distinctions are not neatly demarcated. I have more "high" functioning days than"low" -- but my experience is only mine. A few years ago, in the harsh winters of Minnesota, I had more low days and even nonverbal days. Situations change. But, that's hard for some people to understand.

I doubt there will be civility and mutual support anytime soon. The divisions are simply too deep, the debates too heated.

It is a shame that these debates are the most obvious trait of our online communities.

5 comments:

  1. "But, just as I need to appreciate that their experiences are different, those parent activists need to remember that the "other" autistics face obstacles, too. Those obstacles include job training, access to education, and navigating a medical system that can be intimidating. "

    This is very true. However, can you point to anyone anywhere that is a parent of an autistic child that has written anything that doesn't acknowledge the need you identified above?

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  2. Anonymous:

    Yesterday and today I read several posts on an ASAN blog that suggested some ASAN members were not autistic. Another post, on a different site, commented that high-functioning autistics were not really autistic, and that the DSM was changed for some reason I couldn't quite interpret from the post.

    I've been told I'm not "autistic" and I've been written about on several sites. The idea is that those of us with college degrees, and there are many, are also not authentic or are even intentional frauds. Maybe there are frauds; I'm not about to presume to know.

    There is a huge difference between "autisms" and that is why I don't feel comfortable with the "spectrum" notion or the idea that autism is autism. I have and will continue to state that "autism" is likely many things, with loosely similar expression in behaviors. Some argue that being one big category is good because it increases the numbers of people involved. Others wonder if more is really better when there are such extreme differences.

    I'm too busy with work and my various projects to get that focused on "What does 'autism' mean." For some reason, I happened to read the ASAN blogs this week, along with some others. No idea why I read the blogs, since I was trying to find something else online.

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  3. I should clarify that comments to posts and comments in forums have been critical of some autism advocates. Not that some posts aren't also negative. I just didn't want to link to the long blog post that included all sorts examples of the ongoing debates. The author of the blog has her own point of view as an activist. I don't share her passion... but I suppose I should respect it.

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  4. Yesterday and today I read several posts on an ASAN blog that suggested some ASAN members were not autistic. Another post, on a different site, commented that high-functioning autistics were not really autistic, and that the DSM was changed for some reason I couldn't quite interpret from the post.

    I don't read that blog, so I can't comment on what was said. However, I know for a fact that Meg Evans is self proclaimed autistic and she doesn't have a diagnosis. Its not a problem with money for a diagnosis. She's a well trained attorney with advanced degrees from Case Western.

    I was at one time asked to be the Treasurer of ASAN when it was being formed. But, declined it because I didn't want to be associated with a group that refuses full representation. I was accused of wanting "affirmative action" for unqualified severely autistic people by another board member.

    Just my two cents. Like you, I don't listen or read that stuff much anymore, its almost entirely irrelevant to my life.

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